Experiences and needs of children and adolescents affected by a parent’s acquired brain injury: a systematic review and thematic synthesis

Abstract

Purpose To identify the experiences and needs of dependent children who have a parent with an acquired brain injury (ABI) using a systematic review and thematic synthesis. Materials and methods A systematic search of Medline, Embase, PsycINFO, CINAHL Plus, and Web of Science was conducted. The search included variants of: “children,” “parents,” “acquired brain injury,” and “experiences” or “needs.” Eligible articles reported on the experiences/needs of dependent children who have a parent with an ABI, from the child’s perspective. Thematic analysis was used to identify themes. Results A total of 4895 unique titles were assessed, and 9 studies met inclusion. Four themes were identified: (1) Sustained Emotional Toll (subthemes: (i) Initial Shock and Distress; (ii) Ongoing Loss and Grief; (iii) Present-Day Stress and Emotions), (2) Responsibilities Change and Children Help Out, (3) Using Coping Strategies (subtheme: Talking Can Help), and (4) Wanting Information about the Injury. Conclusion Themes highlighted significant disruption and challenges to children’s wellbeing across development, with ongoing and considerable impacts many years after the parent’s injury. The nature of the experiences shifted with time since the parent’s injury. These children need ongoing support starting shortly after their parent’s injury that is grounded in their particular experiences. IMPLICATIONS FOR REHABILITATION When a parent has an acquired brain injury (ABI), dependent children and adolescents face emotional upheaval, significant stressors, increased responsibilities, and lack of information about their parent’s injury that persist even many years after injury. The nature of these experiences and therefore their needs change based on the acute versus later stages of the parent’s injury. Children often do not ask questions or tell others how they feel, which means that they need support that asks about, and listens and responds to their needs. Support for children needs to start soon after the parent’s injury, be grounded in the lived experiences of this group, consider their parent’s recovery stage, and be embedded as part of service provision rather than rely on children or families to make service contact.